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Female, 25,
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- from lugton but stewarton is home
- I am In a Relationship
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- www.bebo.com/Shona84kelly
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- Me, Myself, and I
- not been on for ages just moved to lugton, 8 years been with william love him to bits we have 2 boys Liam nearly 5 and Aiden 21 months and expecting a wee girl in feb we lost a baby to anencephalic oct 06 and my wee mummy nearly 2 years but seems like yesterday i last saw her
Liam was born with truncus arteriosus and had open heart surgery at 4weeks old at yorkhill hes nearly 5 now and just waiting for more open heart surgery to replace his plumonary valve congential heart defects are the number 1 birth defect in the uk and there is over 35 different types and kills more kids in the uk than childhood cancers and is most common cause of a babys death under a year old but there is no awareness at all and most babies are not diagnosed until its to late the goverment could change that by simple tests but still they dont!!!!
and i passed my driving test so watch out am now on the roads lol
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THIS WAS WRITTEN BY A LADY CALLED ANNA JAWORSKI
What does it mean to be the parent of a child with a heart defect? ©
It means going into your baby's room a dozen times a night just to check and see if he is breathing.
It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe.
It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.
It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet? It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.
It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.
It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"
It means snuggling him in an extra blanket for fear he wont be warm enough.
It means worrying that even a sniffle could cause an infection that would harm the heart.
It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.
I means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.
It means praying for a miracle to save your baby's life.
It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.
It means your own heart knows a pain no parent should know.
It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands, It means feeling strong and determined and brave because you know you have to be.
It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.
It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life.
It means that even though we are strangers we are more to each other than friends could ever be.
Author: © Anna Jaworski0 Comments 92 days
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anencephaly
anencephaly
Infants born with anencephaly are usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brainstem, which controls autonomic and regulatory function, the lack of a functioning cerebrum is usually thought of as ruling out the possibility of ever gaining consciousness, even though it has been disputed specifically. Reflex actions such as breathing and responses to sound or touch may occur. The disorder is one of the most common disorders of the fetal central nervous system.
Anencephaly can often be diagnosed before birth through an ultrasound examination. The maternal serum alpha-fetoprotein (AFP screening) and detailed fetal ultrasound can be useful for screening for neural tube defects such as spina bifida or anencephaly.
There are many false diagnoses for anencephaly, as it is not a common diagnosis, often confused with exencephaly or microcephaly. Also, sometimes a false prognosis stating that an anencephalic baby can live for years is given, but this cannot occur because the brain is open, meaning that infection sets in rapidly. The anencephalic brain is also usually very disorganised on a cellular level
There is no cure or standard treatment for anencephaly and the prognosis for affected individuals is poor. Most anencephalic babies do not survive birth, accounting for 55% of non-aborted cases. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth from cardiorespiratory arrest.
In almost all cases anencephalic infants are not aggressively resuscitated since there is no chance of the infant ever achieving a conscious existence. Instead, the usual clinical practice is to offer hydration, nutrition and comfort measures and to "let nature take its course". Artificial ventilation, surgery (to fix any co-existing congenital defects), and drug therapy (such as antibiotics) are usually regarded as futile efforts. Clinicians and medical ethicists may view the provision of nutrition and hydration as medically futile. Occasionally some may even go one step further to argue that euthanasia is morally and clinically appropriate in such cases.
In the United States, approximately 1,000 to 2,000 babies are born with anencephaly each year. Female babies are more likely to be affected by the disorder.
The cause of anencephaly is unknown. Neural tube defects do not follow direct patterns of heredity, though there is some indirect evidence of inheritance, and recent animal models indicating a possible association with deficiencies of the transcription factor TEAD2. Studies show that a woman who has had one child with a neural tube defect such as anencephaly, has about a 3% risk to have another child with a neural tube defect.[citation needed] This risk can be reduced to about 1% if the woman takes high dose (4mg/day) of folic acid before and during pregnancy.[citation needed]
It is known that women taking certain medication for epilepsy and women with insulin dependent diabetes have a higher chance of having a child with a neural tube defect. Genetic counseling is usually offered to women at a higher risk of having a child with a neural tube defect to discuss available testing.
Recent studies have shown that the addition of folic acid to the diet of women of child-bearing age may significantly reduce, although not eliminate, the incidence of neural tube defects. Therefore, it is recommended that all women of child-bearing age consume 0.4 mg of folic acid daily, especially those attempting to conceive or who may possibly conceive.[6] It is not advisaible to wait until pregnancy has begun, since by the time a woman knows she is pregnant, the critical time for the formation of a neural tube defect has usually already passed. A physician may prescribe even higher dosages of folic acid (4 mg/day) for women who have had a previous pregnancy with a neural tube defect.
Q:What causes an anencephaly?
0 Comments 365 days
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Liam story
Liam was born 21/11/04 we didnt know anything was wrong until the next day but that night he was cold which we did say to midwife but she said he was fine, so next day he had check-up so we could leave hospital, but they found heart mumur so the took liam to special care for echo which they found somthing so the video linked it to yorkhill to dr richenes we werent in room as there was alot of really sick babies in that room and there would be alot of things that would scare us so they thought was best to wait in waiting room, when dr staines came back he had drew diagram of what was up with liams heart and explained he would need surgery in about 4 weeks, liam wasnt aloud out until the wed they wouldnt let him out till the day before we wnt to yorkhill, so on the thur we took him up and he had a echo done and they told us he had type 2 truncus he also had hole in heart and artery going of a strange angle, he was aloud home until date for op was arranged, we were up every week for checks, they called and said it was booked for the 15th dec so after a night of starving him it was cancelled due to no beds in itu the sureon wasnt happy i rem him being angry as liam was gettin worse fainiting when he cried breathless, so it was booked again for the 20th we got home for few days. we went bk in the sunday night where we had to starve him again which is really hard when he screaming and hooked to a drip which beeps constant if moved finally at 9am they came to take us to theatre when the were puttin him sleep it was awful his eyes will haunt me foreva it was like help me mum, was hard, we then had to go book a room at ronald mcdonald which was daft as u aint takin anythin in, i also had a pager which was being held so tigh in my hands, we actually fell asleep in room i know thats strange but anything to make time go faster, finally at 3.30 the pager bleeped and i was scared as the op was finished few hours early and i though somthing was wrong so i ran from ronald mcdonald to hospital up to ward 5a where a nurse took us to itu that was a dreadful site wires everywhere vent machine to help lungs surgeon mr mcarthur came and spoke to us said all went well, now it was up 2 liam, he was sedated until xmas eve i rem watchin waiting for him come round, he did well some days then others wasnt good he had fluid around both lungs, had chest drains in, and few other wee things, then on new years day they took him of vent he manged about 12hours when they needed put bk on they tried again nxt day but same thing hap again so they decided they wanted to to cath to see wat was going on there they found narrowing of the plumory artery so stretched it opne, then tried him of vent again, which was more sucessful they puy him on c-pac and then used oxygen if he did become tired then they would put c-pac bk on and after few days he went to ward spent 2 weeks in ward and came home the 27th jan, he had cath in aug 05 and since then hes been well but 3 weeks ago they said things are starting to happen and stent is planed for nxt year liam also has a jugular vein from cows neck in heart thats wat they used to make his conduit
3 Comments 408 days
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HEy chick,
Thank you!
Docs say they jus treatin the symtoms of it as is no more serious now than seasonal flu, i asked if i shld take precautions wi other kids n kp them off school but they said no. Doc says every 2nd person that walks in her room has swine flu! Was the last thing i expected them to tell me tho i knew they thot it was but thot they were jus bein cautious!
Gave him antibiotics and eye drops offeredpain meds but i got plenty here, so hopefully he'll get beta soon
XxXxXxX
Am good thanx! Glad evrythn wnt ok! I knw she is the best! xxxx
Hey,she's fine nw ta doll & bk at school (thank god! lol) so alls good
Glad liams party went well & cheers 4 the invite anyhw
Bumps fine, doin ma nut in at nite cz its always itchy,dunno why but dnt wanna moan 2 much. Neva had any sickness this time so am happy 2 put up wae a bit of itchin! haha
Hwz everythin wae u? xxx
nah trust me all stick to lucy dadys princess!!!!! yeah a heard bout ya mum sorry here bout what happend but least u can get out wae the wee yins xx
i think ur preg wil go in pretty fast..seans went to his nanas for a few days n its soo quiet without him..but tomorro il get to do a good hour on the pole with no distractions n get sum xmas in...i love xmas n seein the kidees faces...me n eva r jus waitin for paul to cum home from work for cuddles..n a dvd lol xxx
yeah, ive got everything i need just need ta get the house sorted wen we get in thats why a hope she doesnt come till feb
nope, ive no got an app. are you all ready? a dont know what to do the babys room like :S xx
hey pal
i dunno how far on i am until get my scan but 6/7 weeks at a guess lol
where r u staying now? we will arrange a meet up soon pal
miss u loads the ole days were fun huh lol
xxxx
thats good then.
ano thats the council for you 
av got a feeling the babys going to come early-a think she will come in january sometime lol hope everythings ok then. weekend was ok, didnae really do much, went out ta the tournyard for tea on friday nite nd just stayd in n watched xfactor on sat 
xx
how did the party go then?
eh am no sure, we are stayn at james's mums the now. have been for the last 2 weeks - council better hurry up! xx
Hey Shona congrats on the 29th week hope all is well and the flu jab didn't hurt to much x
hi shona, glad liam had a gud time, they grow up so fast.wer all fine, kenzie had hs chek up last mon..all fine, no change with hs sats n hs echo. they said theyr havn bit of a prob gtn the french surgeon over 4 hs op so hes mite nd 2 start lukn 4 sumone else 2 do hs op, wer bk in jan, if we dnt here of a date b4 then. howz liam dn? wen is he bk up 4 a chek up? 29wks pregnant...nt long 2 go. how u feeln? love to u all. x x x
lol nope yin will do me lucy enough lol couldny share her wae anyin else lol!!!!!!!!! driving is so shit a hate it hahaha xxx
Aww did he hav fun?u must b fkd tho?eva asked bout her 7th bday party already..were surprisin her way disneyland so jus put her off lol..am great designer is soo nice to go bk b4 xmas n booked the dancers n musicians so def feels more real..n ma pals crazy ex stalker ws in mail today he got jailed after all the shite he's sd on bebo..so a don't nd to b private no more lol xxx
Wld do doll but morgans jst gettin ova that bug thing so wldn't risk it with liam
Hope he has a great party anyhw 
xx
aye still in sunny kilmaurs added new photos o ma wee yin!!!! trust me wee gals are brilliant lucy sleeps all nyt fae half nine tae roughly 8 in morning it great lol aye how you getting on x
hey pal
how are you&and the boys doing?
long ime no spk mrs
xxxxxxxxx
Hi Shona ,its lynn here michelles mum how you keeping hen ,when are you due your wee daughter and hows the boys doing take care love to you all xxx
A luv ur skin,its crackin dol!!!
xx
Jst popped ova 2 say happy bday 4 liam & hope he had a great day
Hwz u ? xx
Aw say Happy Birthday to him for me. Hope all is well?
xxxx
happy birthday to wee liam. hav a gr8 day wee man! Xxxxxx